I.am a 63yoF who just got diagnosed with Stage 2 Laryngeal squamous cell carcinoma

Dear Cat, welcome to the CSN Head & Neck forum.

I am sure you are freaked out as you say, we all were when we got that diagnosis. It is a very unnerving time as we go into really the unknown to us. So many questions, fears, and just plain am I gonna make it through this? Well, you have come to a place where you will find support and help and I hope someone who had your exact H&N cancer sees this.

I did not have your type of cancer I had throat cancer and then tongue cancer and my last was lymph node cancer. I tell you this to let you know you will beat this. They got me through these cancers and you will get through this and be cancer free too. Also, I prayed a lot and put my faith in God, and by the Grace of God, I am here today typing this answer to you.

Please give a little more info, how did this all start, a sore throat, or some other indication something might be wrong. Are you working with an ENT? What stage is your cancer? Have you had a biopsy, CT scan, PET scan, etc.? It sounds like you have gone through most of this and have a treatment plan already in place and are getting ready to start treatment soon.

I ask you all these things because they are all done and done in a certain order in the treatment of cancers.

Just give us the info you have and understand and that will be fine, we want you to find help, and peace, and comfort here and strength to beat this disease till you get to the finish line and ring the bell and they pronounce you NED (No Evidence of Disease), it's what they say when you are cancer free.

Please do your best not to be afraid, head and neck cancer treatment can be tough so strengthen yourself but the treatment they have these days will eradicate your cancer and you will beat this, be confident.

I and many on here know how sore your throat must be, not because we had the same cancer but because going through treatment the radiation makes our throat area and other areas very sore for a while till we recover and also affects many of us during treatment then we can barely talk so we can relate to your situation now by what we went through. I remember post-treatment of my throat cancer if I would have had to call 911 for an emergency it would have done me no good I couldn't speak loud enough for them to understand me.

As far as G-tubes go many of us have had them, in fact, I have had 3. Many people on here have had them so we can answer any questions on that. I know this is a lot thrown at you when you get H&N cancer, meetings, scans, and tests of other sorts, it can get mind-boggling.

Just do your best to be calm and not worry (I know easier said than done right?)

Are you going to be treated at as local hospital or cancer center, or are you at a major teaching hospital?

One place you may also want to start is at the top of the page here on the head and neck section, click on the Superthread at the top of the head and neck forum and you will find it is loaded with helpful information.

I am going to post some info below for you to read and just to let you know our motto on here is NEGU (Never Ever Give Up)

Info below-not exactly all of it applies to you.

Wishing You the Best

Take Care, God Bless-Russ

So You Think you Have Cancer?

So You Think you Have Cancer or Have Something Suspect Going On in the Head and Neck Area.

Important:

• Do not assume you have cancer and are going to die.
• Many people have worried themselves sick only to find they have no cancer, their problem was caused by something else
• It’s not cancer till they say it’s cancer verified with scans and a biopsy.
• This is a step by step process to check, identify, and treat cancer.
• Whatever your problem is your medical team will get you through this.
• Do Not be, upset, worried, fearful, freaking out, stay calm.
• Cancer is no longer the death sentence it once was but this idea persists.
• Cancer eradication/cure is not a quick process but you will be cancer free.

So Next Step Is To:

• See your family doctor, he may try a round or two of antibiotics or send you to an ENT. (Ear, Nose, and Throat Doctor)
• Go directly to an ENT is also and option. ENT’s are all things Head and Neck.
• If the ENT doctor sees or feels something suspicious or unusual.
• They may take a biopsy if something is suspicious, visible, on or near the surface.
• They will send you for a CT Scan with Contrast.
• If cancer or suspected cancer is seen on the CT scan a biopsy will be ordered.
• If the biopsy confirms cancer your ENT will order a PET scan. Basically a whole body scan with a small amount of radioactive dye to see if cancer is anywhere else in the body.
• Cancer must be verified and identified with a biopsy so they know for sure it is cancer and the type of cancer so they know how to treat it.
• If cancer is not seen anywhere else except where first suspected that is the best news.
• It means they are treating cancer in only one area.

Your ENT or Cancer Team Guides the Process of your Treatment

If you are going through an ENT they may guide the process of your treatment. When I had treatment done my ENT initially found my cancer. He is the one who later took the biopsy. And it was through his office that appointments were made for CT and PET scans. Through his office I was set up with appointments to meet with chemotherapy and radiation doctors. In my case my ENT was my front line guy and through his office everything was coordinated and looked after. And when my treatments were all done I continued to see him for follow up appointments to keep watch for problems or recurrences. I was taken excellent care of the whole time. I had a cancer team coordinated by my ENT.

You May Have Hospital or Cancer Center A Cancer Team

Instead of an ENT you may have been referred to a hospital or cancer center to handle your case. So in this case everything may be at this one facility to handle all your needs during your treatment. This would include the same thing, Radiation and Chemotherapy doctors, PET & CT Scans, an ENT to check you and do scopes to watch over you and anything else your case requires including a Tumor Board to review your case for treatment.

No matter how your case is dealt with there should be someone coordinating all the various doctors, scans, tests, and treatments and follow-ups.

INTEGRATED APPROACH TO MANAGEMENT

A multidisciplinary approach is required for optimal decision making, treatment planning, and post-treatment response assessment. This should include surgeons, medical oncologists, and radiation oncologists, chemotherapy oncologists as well as dentists, speech/swallowing pathologists, dietitians, psycho social oncology, prosthodontist , and rehabilitation therapists. Specifically, a multidisciplinary tumor board affects diagnostic and treatment decisions in a significant number of patients with newly diagnosed head and neck tumors for the best outcome.

What’s Next?

The next phase now is for your cancer team to look at your scans, biopsy, physical condition, blood tests possibly and work up a treatment plan for you using all the information on you they have.

Your case may be brought before a tumor board of doctors to discuss your case and share opinions so you get the best possible treatment and the least side effects.

Your treatment could include surgery, chemotherapy, radiation of some variety or all the above is possible in some cases.

Dental Care

Get a full dental exam and any teeth that need repaired should be and any that need extracted should be. You want to go into H&N cancer treatment with your dental condition in perfect condition.

Gain Weight

Gain weight unless you already carry extra weight. Eat everything you like and lots of it.

This is one time you can let go and not worry about calories-enjoy.

Consult with your doctor about your weight.

Feeding Tube?--Port?

Depending on your cancer situation and the treatment plan that is worked up for you your doctors may want you to--

• Get a feeding tube put in. (Gives your nourishment when you can’t eat-they are a lifesaver)
• Get a Port put in. (Ports are true vein savers)

I highly recommend if your doctors tell you to get either of these or both of them before you start treatment don’t hesitate to get them you will be glad later you did. The doctors have experience with past cases and the treatments you are going to get and they know how it affects the human body-trust them.

Mask?

If radiation is going to be part of your treatment you will be getting a mask made that is custom made to your head and face.

What is a radiation mask for?

“The purpose of the mask is to hold your head and neck still and in exactly the right position during treatment,” To make sure treatments are delivered exactly in the proper area every single time.

Nothing to fear here, they take a nylon mesh from warm water and stretch it over your head and it conforms to the shape of your head and face. This mask fastens to the table as it will during all your radiation treatments so your head is held still and in one place and insures your head is in exactly the same place every time providing extreme accuracy in the delivery of radiation every treatment. After about 20 minutes they will unfasten your mask and when it dries and sets up will retain the form of your head and securely and gently hold your head in place for treatment each time. This ensures treatment is delivered exactly every single time to the cancer area.

Treatment for Head and Neck Cancer

Cancer of the head and neck is an umbrella term used to describe a variety of malignant tumors that occur in the mouth, lips, throat, nose, sinuses, larynx, and salivary glands. Together, head and neck cancers account for about 4% of all cancers in the United States.

A diagnosis of head and neck cancer can be overwhelming. Fortunately, effective treatments are available, including surgery, radiation therapy, chemotherapy, targeted drugs, and immunotherapy.

Cathy thanks for some details of your previous cancer. Luckily getting the PET scans showed this up and I am hoping it is small at stage 2 and you will be blessed with the eradication of this cancer also. Cathy fight this with all your strength you can do this. Cathy if your doctors recommend a feeding tube get it you won't be disappointed. It is your friend, your helper, your companion to get you through a difficult time when eating is difficult or impossible for a while. So many people want to avoid them but I say embrace the idea and make it easier on yourself, this treatment and situation are difficult enough to deal with in itself. Besides when treatment is over and you are through this they just remove it in the office with a pull and a little twist of the wrist it comes right out and your stomach opening closes up by itself in a short period of time. You need to gain weight, and eat fattening stuff like lots of butter, bacon, and anything fattening you can get your hands on. Pure ice cream etc. Also, you can buy online Boost Very High Calorie since the high-calorie version doesn't seem to be available in stores locally which is 530 calories in an 8-ounce container. The cheapest place I have found it recently is a place called Hey Med Supply https://heymedsupply.com/nutritionals-and-feeding-supplies/

I am going to post a list of recipes below here that will help you with ideas to gain weight. I am concerned for you and I pray God will watch over you and lead you through this.

Take Care, God Bless-Russ

Recipes Below---

To gain weight, for now, don't worry about any certain food, I recommend eating food that has a substantial amount of calories and or fat also. Like bacon and eggs, or sausage and eggs and or pancakes, waffles, etc. with lots of butter and syrup. Cheeses are good to add also such as cheese topping on a bowl of chili. Also after my last bout out of the hospital, I had lost a good bit of weight also and had a bit of trouble putting it back on so I purchased Boost VHC (Very High Calorie) and was drinking one in the morning with breakfast including trying to eat at least 3 meals a day of some size.

Also eat a bunch of snacks like candy, cupcakes, peanut butter crackers, etc. you can fit one in anytime your sittin around. Also, nuts like peanuts, cashews, almonds, etc. have a lot of calories and are even good for ya.

Also here is a weight gain recipe that 2 ladies shared that I found a long time ago related to cancer and gaining weight afterward--

Deb,

So sorry I’ve taken so long to get that receipe for your dad! I checked with our nurses and here it is:

1 box (3.4oz) of instant pudding

3/4 cup half & half cream

1/2 cup of water

1 cup of carnation evaporated milk (use canned not powdered etc.)

Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This receipe makes 4 servings. We use it to help individual’s we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories etc. Let us know how your dad is doing!

Karen

These Recipes and Tips Are From Debbiel0 on CSN H&N Section

And here is another communication shared recently with me by a lady on this forum concerning weight gain after cancer treatment and I am sure she would be glad if I would share it--

• Coffee cream ( 18%) 1 cup 480 calories
• Coconut milk 1/3 cup 150 calories
• Greek style yogurt 1 cup 270 cal
• 2 tbsp Ground Flax seed 100 cal
• 3 tbsp Hemp Hearts 170 cal
• 1 tsp nut butter 100 cal
• 1 tsp honey 100 cal
• banana 80 cal.

I would mix all of the above into a shake for my husband. It makes about 3 - 3 1/2 cups and 1300 calories.. he would sip on it all day. Then we would make him soft eggs or oatmeal to top off the calories for the day. Jello or pudding and ice cream are also another easy foods to slide down.

Using coffee cream when making soups, or sauces, cooking oatmeal in it, using it for puddings. Is an easy way to boost calorie intake. The Hemp Hearts and ground Flax can be expensive. If you have access to Costco, they are reasonably priced there. ( at least in canada that is the way it is)

Use honey as much as you can in tea or coffee, or just in warm water.

I think the best advice I got from our nutritionist was to think outside the box and add cream or greek yogurt to what ever you can think of. Throw in a couple of tbsps of flax or hemp seeds to soups, your boost, hot cereal cooked in heavy cream. Mashed potatoes with heavy cream and lots of gooey gravy is always good too.

Hope some of these ideas help. Another well balanced change from boost is Soylent. I cant remember the calorie count, but it is a very good meal replacement.

I know I am kind of rambling... but hope some of these ideas help, or at least give you a variety. It is hard to get excited for a meal that is same as the last one!

Split pea soup and baked beans with honey are great for calories..

The flaxseed and hemo hearts dont change the taste all that much..just a way to sneak another 100 calories in. I had never ventured into that type of food either. My daughter in law is super healthy, and introduced me ( young ones, ya know!)

Almond butter or cashew butter is just another alternative to peanut butter. Change up the taste a bit.

I have a long list if food allergies, no dairy, no cheese, no chocolate, so finding calories was really tough for me. Example, geek yogurt can be up to 270 cal, my non dairy yogurt is 60 calories. So, when my husband was going thru his treatment it was actually fun for me to keep finding new things to make for him. Cheese is another good source of calories, melt it and add it to soup, potatoes.

Take care Russ. Maybe sit down and try to enjoy a slice of pumpkin pie with whipped cream!

Also Here Are A Few More Postings For Weight Gain From The Forum

Flyinhigh says:

High calorie

I use a powdered mix from GNC called 1340. If you followed their mixing instructions and used 4 large scoops with water and you supposedly get 1340 calories. I mix it half or third strength with 12 oz. of milk and figure I get 500-600 calories, plus a lot of protein. You can try this and if you don't like it or can't tolerate it GNC will take it back and refund your money. It comes in vanilla, chocolate or strawberry(my favorite).

Grandmax4 says:

calorie

I used a drink called Scandishake, bought it through Amazon. It's really good, can't remember the calorie and protein, I made it with crushed ice and milk in a blender, delicious

Drivingdaisy says:

Drinks

Only drank Orgain, organic and small amount of natural sugar. Decided no more chemicals in My body. I just poured it in My feeding tube. I still drink it but the plant based. Became lactose intolerant. Good stuff. I'm more of a naturalists but to each their own. Going on 4 yrs NED, so did something right.

Suzj says:

if you want to mix it up..

If you get the urge to mix it up, go with a high Protein Boost, mixed with a carnation instant breakfast, and a few scoops of Ice Cream - that'll up your calories

Here's my radiologist's recipe. You can change the flavors by finding a substitute for peanut butter, using a different fruit, or a flavored yogurt. These are mixed by my better half in a Vitamix machine.

1 cup ice cream

1 cup greek (or any full-fat) yogurt

Pack of Carnation instant breakfast

1/3 cup peanut butter

1 banana

Milk to thin to the right consistency

Sorry to hear and hope everything goes well. My husband was diagnosed with the same type of cancer. He lost his voice the first week of radiation and had a g tube inserted. He underwent the radiation and chemo. Then the PET scan showed the tumor was still there. He was referred to a specialist at Emory University Hospital, who was great and had a great bedside personality. The oncologist wasn't. Surgery was performed to remove his larynx and the tumor. He then had to breathe thru a hole in his neck which is called a stoma. He was able to eat again for a short time. Then we found out it had spread to the cervical of his esophagus. More radiation and chemo which didn't work and then it spread to his lungs. At this time, he decided no more treatments. No one bothered to tell us that his squamous cell was aggressive. I later read it in his diagnosis papers. He was a pipe smoker and beer drinker and they said that was the cause. But he had had squamous cell cancer on his face twice that had to be removed. That doctor told us it couldn't get into his blood stream, but it can.

Treatment was hard on him but he was 73 when treatment started and before that in good health. Please remember that everyone responds differently to their treatment. He had a feeding tube basically thru out treatment. He passed 5 years after he was diagnosed.

Wishing you the best in your journey.

Grandma,

I think you should reconsider the "shut your friends out" thinking. I believe the kindest thing you can do for your good friends - is to allow them to help you, during a difficult time!

Please think about it!

Thank you,

MG